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You never know how strong you are until being strong is the only choice you have left.

“You never know how strong you are until being strong is the only choice you have left.” – Scott Dolezal

I read this quote in a magazine I flipped through yesterday in the waiting room of one of the leading cardio-thoracic surgeons in Portland, Oregon and it sums up perfectly the lesson I am still learning from the events leading up to today.

It is less than 2 weeks from the day our family boarded the emotional roller coaster that I have come to know as our current reality. On Friday, September 9, I came home from work to find my 38 year-old husband (J) laying down on our bed staring blankly at the ceiling. This in itself is not something to be concerned about considering we both work fairly demanding jobs and often just need time to decompress at the end of a day or week.

Nonetheless, it did warrant a check-in so I asked if anything was wrong.

“I’m just a little freaked out about something. Last week, at my physical, Dr. Lam (my new hero!) suggested I get an echo-cardiogram, which was this morning. It turns out they found something… well 2 things actually.”

And that’s how it all began… for me at least. For J, I can’t even begin to imagine what was going through his brain that day, but I think he was in a state of shock and disbelief. Truth be told, he is still dealing with the emotions that come with facing your own mortality. By then, he had already spoken to a cardiologist from our clinic about the diagnosis, and though he couldn’t articulate the clinical terms to me, what I learned that day is that he had a defective heart valve which had caused swelling of the heart.

So much has happened since that Friday, and we now at least have a better picture of what we are facing in terms of treatment and proper diagnosis. It turns out that J was born with a condition called Bicuspid Aortic Valve (BAV), which means that the valve that controls blood flow from the heart to the aorta has only 2 cusps, whereas this valve is typically a tricuspid (or 3 cusp) valve. This condition is fairly rare (<2% of the population) and in and of itself is not a concern. Except when it is not diagnosed and monitored from childhood. In our case, J and his family had no idea he had this condition and because of this, his heart has been compensating for his entire 38 years of life. Common scenarios for BAV include valve regurgitation, and aortic stenosis or aneurysm. In our case, we’re 2 for 3 – J has severe aortic regurgitation and a 5 cm aortic aneurysm – both of which have put him down a path that requires… gulp… open heart surgery.

Pause… I want to be sure that everyone who reads this understands that, while extremely serious, neither condition is uncommon, incurable, or emergent. Which means there is not only a clear path to fixing the situation (a cure), but because it was found in time, we have the time to make informed decisions about how to correct it. (J’s new cardiologist, Dr. Beckerman suggested we send his primary care physician, Dr. Summer Lam, a very nice Christmas card, this year, because she likely saved his life!) Valve replacements are procedures that are done everyday and in a patient of his age, have a near perfect survival rate, nearing 99%. But it doesn’t make it any less scary, for J, for me, or for any of the family and friends who care about him.

And so, for the last 2 weeks, we (most of J’s immediate family and I) have been madly learning as much as we can about BAV, aortic aneurysm, and the procedures necessary to correct them, because we are facing some very big decisions in the coming days – timing of surgery, choosing a surgeon, valve replacement type, etc. As I sat in Dr. Storm Floten’s waiting room yesterday, I happened to pick up a copy of Heart Insight Magazine, whose cover story was about a 19 year old boy, who had already survived 4 heart surgeries. Though our situation is not even close to that in Scott Dolezal’s story, I drew a little inspiration from his closing quote, which is exactly what is keeping us all moving forward, right now.

“You never know how strong you are until being strong is the only choice you have left.”

That’s my Lesson #2, in my advice to a younger me. And likely the theme of any posts in my near future…

My heart goes out to you! Please be sure to assemble a good support team. It makes all the difference. And don’t let the recovery time get you down. Be sure those around you are communicating the recovery process to you. That was the hardest for us; my husband was frustrated with how long it was taking to feel like his old self – a very fit young man. But I was able to tell him how much progress I could see from day to day. It was difficult for him to see being the one struggling through it. Good luck to you! I’ll keep you in my prayers. Feel free to let me know how things go, and if I can answer any questions for you…

Diana:
I have kept your suggestions in mind over the past 5 weeks and indeed it did help to have a cheering squad. Now that the pleural effusion has cleared up and I am cleared by the surgeon to move around more, I am feeling so much better. I know, as with your husband, that getting back to my fit self will take time, but I am on the road now! Thank you so much. Dawn

I am facing this sAmerican exact scenario. Was diagnosed 3 days ago. Needless to say, I am in shock and this had rocked our world. I am 31, otherwise healthy, mother of 2 toddlers, and I am scared shitless to be honest. How did your husbands surgery turn out. I have so many questions, I don’t even know where to begin. I hope you all are well. My thoughts and empathy are with you…sincerely, a nervous mom in washington

I am so sorry to hear this! I will keep you in my thoughts and prayers. Thankfully my husband is all recovered for the most part although to hear him tell it he doesn’t feel like the same person. How can you be after an experience like this. His surgery was 3 years ago and he did have some minor complications, but he was young and fit, you are younger and probably more fit than he was at the time. His surgeon and nursing staff told him he was a dream patient because of his age and fitness level. His recovery went very smoothly. I think you’ll find the same. My only as advice is to be sure to have a support system and allow people to help. You will need help in your recovery, and will need to focus on getting better so you can be there for your kids. Until you can take care of them, be sure you have help! Take care! -Diana